Closing her testimony as one of the plaintiffs in a mass lawsuit involving leprosy across Japan, Nobuko Harada said in a quivering voice, “All I want is an apology from the government while I am alive.”
The group of 568 respective family members is seeking damages over the government’s mistreatment of them and discrimination against them as family members of leprosy patients.
In a civil court at the Kumamoto District Court, southwestern Japan, in late April, Harada, 74, recounted her struggle since she was seven, when her father was diagnosed with leprosy (now treatable), also known as Hansen’s disease, and sent to a national isolation rehabilitation facility in 1951.
Born and raised in Hokkaido, her life was irrevocably changed following her father’s confinement to the sanatorium, in line with the “non-leprosy prefecture movement” policy endorsed by the government at the time.
This happened despite an effective drug that had been introduced to Japan in 1948, which allowed patients to receive at-home care. Leprosy is a chronic bacterial disease that mainly affects the skin and nerves. But it is not highly contagious and is treatable.
Due to severe discrimination and the misconception of leprosy as a “strongly infective and incurable disease,” local government officials thoroughly “cleansed” her home with antiseptic powder and eventually informed neighbors of her father’s illness.
Harada’s mother immediately lost her job at a fish-processing plant as co-workers feared being infected with the disease.
Her mother had to earn a living as a fishmonger but the family was unable to make ends meet. At night, Harada and her mother would scavenge for fish to eat at a nearby fishing port.
“One night, my mother said we should commit suicide together. But I refused and started to cry because I was so scared of dying,” she said in the courtroom through tears.
The central government adopted the “isolation policy” for leprosy patients from 1907 and forced them to live in isolation facilities across the country “to eradicate the disease in public.”
The confinement policy continued until 1996, when the government abolished the anti-leprosy law.
At the peak in the 1950s, the government segregated more than 11,000 patients into national sanatoriums while many of their children as well suffered severe isolation and discrimination in society, the plaintiffs argue.
A man in his 80s who joined the mass lawsuit on condition of anonymity, as he feared ostracism, also spoke in court.
He and his younger sister were ordered to live separately in dormitories built for patients’ children. He was only permitted to meet his father who had the disease in an isolation facility in western Japan once a month.
Another woman in her 70s talked of her traumatic experiences of being bullied by her aunt when she was in primary school after her mother was confined to a sanatorium with the disease.
The government has not provided any compensation to the family members of leprosy patients. In 2001, the Kumamoto District Court recognized that the isolation policy was unconstitutional and awarded 1.8 billion yen ($ 16 million) in damages to 127 leprosy patients who had sued the central government.
The ruling stated that the government’s policy which lasted nearly 90 years in Japan was “unconstitutional after 1960 as the disease was considered curable without confinement.”
The government, however, argued in the suit filed two years ago that the isolation policy for leprosy patients did not cause damage to their family members, while admitting segregative measures caused discrimination and prejudice against the patients to spread.
“The government has not done anything for us after depriving our parents and forcing us to live in poverty through the isolation policy,” Harada said in an interview with Kyodo News in February 2016, about a week before joining the suit against the government.
“The isolation policy and ostracism suffered because of the disease severely affected not only patients but also their children, as they were deprived of the chance to foster parent-child relationships,” said Ai Kurosawa, an associate professor who specializes in human rights issues at Tohoku Gakuin University.
The ruling for Harada and the other 567 plaintiffs, demanding 5.5 million yen in compensation for each and a court order for the government to formally apologize in major newspapers, is expected to be handed down in March 2019. But the stigma of leprosy persists.
Harada is among fewer than 10 of the plaintiffs who have disclosed their real names and accepted interviews, while the majority are identified by numbers in court.
One male plaintiff in his 30s got divorced two years ago. His wife left him a few days after he told her that his mother was a leprosy patient, according to lawyer Yasuyuki Tokuda, co-defense counsel for the plaintiffs.
“Patients’ family members still face harsh discrimination today…The facts show how strong the prejudice surrounding the disease still is,” said Tokuda at a conference held in mid-May in Okinawa to address problems related to leprosy.
Tokuda admits a single ruling will not heal all wounds but hopes it will continue the conversation about ending discrimination against people affected by leprosy.
“We have to create a huge wave throughout society to settle the problem just like the 2001 ruling that denounced the government and made it compensate for damages caused by the isolation policy.”